Should You Tell Dementia Patients The Truth

Selecting The Correct Response To Reduce Distress

We instinctively want to be towards the whole truth’ end of the spectrum, but we also want to minimise any distress our response causes to the person with dementia.

But these aims often contradict, leaving us to seek a balancing act or a least-bad trade-off.

One consequence of this approach is that it supports a direct lie only if to do everything else would cause the person significant physical or psychological harm. Professionals sometimes call this a therapeutic lie, but it needs to be seen a bit like antipsychotic drugs: use only under very selected conditions and then with care.

Its also really important to recognise how hard this balancing act can be, particularly if the persons realities/beliefs fluctuate for example, they are time-shifted only some of the time.

Carers can often be unfairly accused, find that their own reality is being suppressed, or feel unnecessarily guilty if they occasionally get their response wrong.

Coping With Dementia And Lying

Each dementia patient experiences different symptoms at different times throughout the course of their condition. Since Alzheimers disease and other forms of dementia do not typically progress in a neat and predictable pattern, it is important to understand that new behaviors like confabulation and wandering often come and go without warning. As with many other symptoms, it is best to prepare for the likelihood of dementia behaviors before they arise instead of being caught by surprise.

Alternatives To Therapeutic Lying

The relative effectiveness of therapeutic lying may be evaluated in comparison to alternative responses to confused or distressed individuals. One such alternative approach is distraction. This involves diverting a patients attention away from misunderstandings, in order to avoid lies or further patient distress as a result of correction. Distraction is often used alongside transformation of questions, thus answering as if the patient had asked another question.22 This method could be effective in reducing escalation of situations, whilst still assuring patients feel valued and considered. However, this technique raises its own ethical dilemmas and can be criticised for its inability to meet patients underlying needs.

Some professionals prefer to address the emotion behind their patients words rather than employing techniques such as lying or distraction. This theory believes that statements made by patients with dementia can give healthcare professionals an insight into their needs. For example, anxiety may be expressed through questions about a patients deceased parents, showing an internal desire for comfort.

This requires the compilation of a timeline of life experiences, including those of great emotional significance. In doing so, the professional is able to consider the best approach to the patients care, which may involve assenting to a patients current beliefs. Here, there is a reduced risk of the lie being detected or further escalation of the situation.

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When Inaccurate Beliefs And Memories Are Hurtful

Unfortunately, therapeutic fibbing isnt suitable for all situations in which your loved one has inaccurate memories or misguided beliefs. Sometimes, patients with Alzheimers disease experience paranoia and delusions. Coupled with the frustration of misplacing belongings and household items, its common for these circumstances to give rise to suspicion and even hurtful accusations. A belief that her grandson stole money from her wallet is not one that you want to affirm. Of course, there are circumstances in which caregivers and family members have taken advantage of loved ones with Alzheimers disease, but if youre certain an accusation is false, youll need to attempt to resolve the situation.

The important thing in responding to these beliefs and accusations is to not take it personally, and that the disease is the cause, not your loved one. Be tolerant and patient, and respond with kindness while gently explaining to your loved one what actually occurred. For instance, if your loved one is accusing her caregiver of stealing her jewelry, you can usually resolve the situation by locating the misplaced item and explaining that it was simply misplaced. If your loved one believes that a family member has stolen an item of clothing when they actually took it to the dry cleaner, explain clearly, but gently and with kindness, that the item is being cleaned and will be returned promptly. If possible, keep records and receipts that you can use to backup your explanations.

Try Not To Take Dementia Lying Personally

The Caregiver Forum is populated with stressed caregivers who are struggling to cope with dementia patients hurtful untruths. Even when they are performing simple household duties like washing clothes or setting up a pill box, they can be faced with accusations of theft or neglect.

I remember the last year of my mothers life when she frequently told the housekeeper at her nursing home that I was stealing her clothes so I could wear them to work. It was funny in its own way, but Moms suspicions and lack of trust were also somewhat painful. I was simply doing the same thing Id done for years: swapping her out-of-season clothes in her tiny closet with season appropriate items that I stored for her. We had done this little switch-out for years, and it had always been fun rediscovering forgotten items and gifting Mom a few new ones. However, that last year of her life, it was just sad.

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Positive Aspects Of Therapeutic Lying

The majority of arguments in favour of therapeutic lying centre around a pragmatic approach to each patients situation. Arguments exist to show that lies told in a patients best interest are among the most acceptable, in addition to lies that prevent patients from coming to harm.7

For example, therapeutic lying is deemed more acceptable in cases where a patient is being recurrently retraumatised by the truth. In the later stages of dementia, it is common for patients to become mentally time-shifted. In cases such as these, patients may believe themselves to be living in the past.8 Repetitive correction may be distressing and considered cruel, especially in cases where confusion centres around the deceased. Revealing to a person with dementia that their loved one has passed away can lead to severe bereavement reactions, which are upsetting for both the individual and those in charge of their care.9

There are also concerns surrounding the impacts of constant correction on patients with dementia. These include feelings of anxiety and reluctance to express thoughts and emotions in the future.10,11 Thus, therapeutic lying may be considered beneficial in maintaining valuable communication between patients with dementia and those caring for them, whilst also allowing patients to remain social and content.

When Is It Ok To Tell A White Lie To Someone Living With Alzheimers Disease

Is it OK to tell an Alzheimers patient a white lie?

This is a question posed by one reader of the Washington Post, whose father has dementia, but an issue faced by many families across the country who are caring for their loved ones. They have to ask themselves which is worse, telling white lies or telling harsh truths?

Though this practice of telling white lies is controversial, therapeutic fibbing as its called by the Alzheimers Association can decrease agitation and anxiety in the patient and ease the stress on the caregiver.

Doctors and medical ethicists often talk about upholding the values of truth and honesty. But it can be difficult to see how these values apply in this case. Penn Memory Center Co-Director Jason Karlawish frames it in this way: the loving deception of people with dementia is all about intent, adding, The moral role of the caregiver is to respect the persons sense of identity and self.

The default is the truth and that the mere fact that the truth may be painful isnt sufficient to avoid it, he explains. Only if the patient cannot process and make sense of a particular truth is it okay to lie. Of course, there is a difference between accepting the patients reality and mocking it. Citing examples of what hes seen in his practice, he says, You dont make eyes to people around you. You dont snicker. You dont joke that its 1963 when its 2018.

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Communicating With A Loved One With Alzheimers Disease

Communicating with a loved one who has Alzheimers disease is challenging in many ways, and it can be frustrating for both caregivers and their loved ones. Keep these communication tips in mind to guide you through effective communication with your loved one throughout the progression of the disease.

While every situation is different, lying to your loved one with Alzheimers disease is an appropriate response in many situations. Knowing the techniques for handling inaccurate memories and symptoms like delusions and paranoia will help you develop a compassionate response in every situation, validating and reassuring your loved one and offering gentle corrective explanations when necessary. Having the skills to respond appropriately will help to maintain a positive, stress-free relationship with your loved one.

Ethical And Moral Considerations

The ethics and morality of therapeutic lying are key when discussing its place in dementia care. Currently, no official UK healthcare guideline justifies lying to patients.15 For example, the General Medical Council states that doctors must be honest and trustworthy in all communication with patients.25 These guidelines are based on fundamental elements of modern medical ethics. An example of one such principle is the patients right to autonomy, their right to make informed decisions regarding their care.26

This principle would seem to require total veracity with patients regarding their care and situation. However, autonomy is complicated in the case of dementia patients as it assumes competency. Competency requires the capacity to evaluate the risks and benefits of treatment, an ability often lost in later stage dementia. The ethical principles of non-maleficence, the duty to do no harm, and beneficence, the duty to do good, are also paramount in ethical debates surrounding therapeutic lying. However, these principles often conflict with autonomy, as the necessity to minimise patient confusion or distress is often antagonised by the moral obligation to tell the truth.27

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Should You Lie Or Tell The Truth To Your Parent With Dementia

I was on a 4-day cruise to the Bahamas with my Mom and my best friend Theresa. We had all just enjoyed the sail away party on the upper deck. The cruise ship was smoothly sailing away to calm seas. Later, as Mom settled in the cabin on our first night, she asked if she was in the hotel. I answered: No mom were on the boat. Oh? Ok but were not moving she said somewhat confused. I replied: Yes were movingyou just cant feel it. A few minutes later, Are we in the hotel? My friend and I responded with the truth, No, were on the boat. Oh, umm, ok this time with a more a pained and puzzled look. After the seventh round, Mom repeated her question: Are we in the hotel? By this time , Theresa and I chimed in unison and lied: YES! You are in the hotel. Clearly relieved, Mom smugly smiled and with confidence said Huh, I thought so! She finally went off to sleep.

So, is lying to your parent with dementia okay? Or is it best to tell them the truth? Always?

The ethical dilemma: truth or lies

There are valid arguments on both sides of this issue. It is an ethical dilemma often faced by adult children when their parent asks questions that may leave them unsure about whether to answer honestly. Each situation should be dealt with on a case by case basis with a plan that best suits the timing and circumstances of a discussion.

Moving through the ethical dilemma

Things to think about around truth telling:

The Case For Disclosure

Several authors have discussed the benefits of disclosure . For example, disclosure while the person is in the early stages of dementia gives them the opportunity to do things that may be important to them. They may wish to:

Plan for the future

Resolve family issues or ensure family members security

Put their financial affairs in order

Attend to spiritual matters

Travel, take a holiday or achieve a lifelong ambition

Consider the available treatments or look into complementary therapies.

There is no cure for dementia at present. However, several drugs have been approved for treatment of the most common cause of dementia, Alzheimers disease . These are donepezil, rivastigmine and galantamine, known as acetylcholinesterase inhibitors. Research has shown that as AD progresses there is decreased production of acetylcholine but that in people taking AChE inhibitors the acetylcholine produced is preserved for longer. In real terms, this means that in many people taking these drugs disease progression will be slowed, if not temporarily halted.

The drugs have been approved by the National Institute for Clinical Excellence for people with mild to moderate AD. Mild AD is usually associated with a mini mental state examination score of 21 to 26, moderate AD with an MMSE of 10 to 20 . Severe AD is usually associated with an MMSE of less than 10.

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How To Share The Diagnosis

Sharing the initial news of the diagnosis may come from any one of a number of people.

The doctor or specialist, assessment team or members of the family may talk to the person about the diagnosis either individually or as a group.

You might consider having someone present at the time of telling to provide extra support.

Planning ahead about the best way to share the diagnosis will make it easier.

As individual responses will be different, careful consideration must be given to every individual situation.

There are some considerations that will be generally helpful when talking with a person about their diagnosis:

• Ensure that the setting is quiet and without competing noise and distractions.
• Speak slowly and directly to the person.
• Give one message at a time.
• Allow time for the person to absorb the information and to form questions. Information may need to be added later.
• Written information about dementia can be helpful to take away and provides a helpful reference. Dementia Australia has information written specifically for people with dementia. In some instances this information is available in video or audio format. Contact the National Dementia Helpline on 1800 100 500.
• Ensure that someone is available to support the person after being told about the diagnosis.

Its Not A Friendship Anymore

Visiting Auntie Col can be exhausting. I will feel quite depressed at her living arrangements. To me she is a prisoner in her own increasingly untidy and chaotic home. She is on her own apart from rushed visits from carers who cover her physical needs and a twice weekly trip to a daycare centre. We discuss moving into residential care, more for the social aspect than anything else but she gets upset and always makes a comment along the lines of who are you to tell me what to do? This usually stops me in my tracks because at heart I feel that its not my business to impose my will on her who am I, indeed, to presume to know whats best for her? Her dementia isnt so bad that she is a danger to herself, shes just unhappy. But if she chooses loneliness, thats up to her, right?

A visit to a friend of Cols got me thinking about my attitude. Margaret has known Col since they met at during the 1970s at an exercise class. This class, which was all the rage at the time, seemed to involve swinging baseball like clubs around, one in each hand. The Health and Safety implications seem quite alarming now and I dont know if anyone else remembers this at all but I do recall my mum heading off to the village hall to such a class, looking like she was going out to administer a punishment beating.

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How Common Is Dementia

Research shows there are more than 850,000 people in the UK who have dementia. One in 14 people over the age of 65 have dementia, and the condition affects 1 in 6 people over 80.

The number of people with dementia is increasing because people are living longer. It is estimated that by 2025, the number of people with dementia in the UK will be more than 1 million.

Further information:

Do Dementia Patients Recognize Family

In the later stages, memory loss becomes far more severe.

A person may not recognize family members, may forget relationships, call family members by other names, or become confused about the location of home or the passage of time.

He or she may forget the purpose of common items, such as a pen or a fork..

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What Do Patients Want To Know

The question of what patients with a diagnosis of dementia wish to be told remains largely unexplored. The Fairhill guidelines report a series of meetings involving the testimonies of patients and caregivers about ethical aspects of dementia care and they are firmly of the opinion that a patient with mild dementia should be told the diagnosis. However, there is little research evidence obtaining views of patients themselves on being told a diagnosis of dementia.

One may gain some insight into the views of elderly patients with dementia by examining the views of other elderly peer groups. Studies have looked at cognitively intact older adults in different settings and asked them their views on case vignettes about dementia and a hypothetical diagnosis . These studies showed that a vast majority wished to be fully informed if they were faced with this condition.

An ongoing qualitative research project is underway through the Mental Health Foundation, obtaining the reaction of a small group of patients to being told their diagnosis of dementia. This work stemmed from a document produced for Alzheimer Scotland Action on Dementia on truth-telling .

Box 1Good practice in the disclosure of prognoses and diagnoses

Giving bad news